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1691407 tn?1332712547

Post transplant 1/10/10, triple therapy TX yes/no??

My husband, 54, post transplant on 1/10/10, elevated ALT ans AST in April 2010, started dbl TX 135 pegasys and 600 riboviron, also Procrit 20,000 twice a week and Neupogen 300 once a week.  He ended all treatment in December, 2011 as directed from MGH, as we had been referred to Mayo Clinic in AZ for triple therapy TX.  MGH and our Vermont Hepatologist referred us to Dr. Hugo Vargus, at the Mayo Clinic in Phoenix, AZ in December, 2011.  We decided to buy an RV and travel (bucket list style).  We ended up here for our Apt at the Mayo Clinic, only to be told, they have never treated anyone post transplant that have not transplanted at the Mayo Clinic . . .  Go figure!!!  So the dbl tx ribo/peg was stopped in December, and Gary's labs blood wise have started to rise a bit, but his liver enzymes, BUN, alk phos, and viral load have gone up . . .  VL is now 18 mil compared to 1 mil in December!  We are trying to figure out if searching for another clinic to tx him with the triple therapy is a good idea or not.  MGH is not using the triple therapy on their post transplant patients, don't know why, but they just are not....Any advise will be appreciated . . .

December 27, 2011 labs . . . VL 1.2 mil, Creat .9, BUN 10, Alk Phos 88, Mag 1.9, Pot 4.7, Alb 2.7, AST 31, ALT 23, Billi .3, HCrit 30.7, Hglobin 9.4, RBC 2.93, WBC 2.9, Plat 78.  
March 8, 2012 labs . . . VL 18 mil, Creat 1.0, BUN 31, Alk Phos 160, Mag 1.7, Pot ?, Alb 3.9, AST 63, ALT 70, Billi .5, HCrit 41, Hglobin 13, RBC 4.1, WBC 3.9, Plat 85.

That is all I have . . . His mental status is slow, his ST memory is non existent, close to 10%, his irritability is high like a 8 out of 10, his insomnia is high, he sleeps maybe 4 hrs straight, if lucky (he takes Ambian CR 12.5 every night, Trazadone 100mg every night, and Remeron (Mirtazapine) every night)  He still has insomnia . . . Gary is tired when ever you as ask him.  He is eating more since stopping dbl TX.  He also has had Type 2 diabetes since pre transplant, he is insulin dependent, He uses Novalog 70/30 mix twice a day, and regular Novalog short acting as needed.  

Thanks to everyone who reads this and gives us their advice.  We are feeling so unsure right now.  
Best Answer
446474 tn?1446347682
Hi Allison.

I will try to make some comments on your new recent posts so that you can understand what is "normal" and what is "not normal" meaning “typical” both pre and post transplant. We must remember each of us is a unique individual and will have out own path through liver disease and transplant.

“Pretransplant, he had hepatic encephalopathy bad, being treated with Lactalose and the antibiotic Xifaxan.  20 days before his transplant, he went into a coma and was on life support.  His kidneys were failing, he was getting dialysis, and there was more, it was very traumatic.”  

* Many transplant patients go through what your husband did. A very good friend of mine had the exact same experience. He had a MELD score of 43.
What was your husband’s MELD score pretransplant?

“So after his transplant, he continued on breathing tube, feeding tube, all outgoing tubes, and he did not come out of the coma for at least 20 more days, then he was in and out of consciousness for another 20 days or so.  This started Christmas day 2009.”  

* This is not normal. He had a difficult transplant. At the TP center I go to the mean time stay in the hospital is about 5-6 days after transplant. Your husband had very serious complications from his liver disease and transplant. The mean time in ICU is less than a day at my TP center. So complications must have arisen.

“He finally was able to leave Mass General hospital at the beginning of March, then was transferred to a Rehab facility in Boston for 3 more weeks.  We did not return to our home until the first of April.  Then home health nurses came to help us monitor him and provided PT and OT in our home for 6-8 months.  He never fully recovered from this. . .”

* Yes, it is typical that he would need rehab (physical therapy, etc) after being in the hospital that long and being bed ridden for so long. To have taken so long to recover and then go to rehab indicates he had to adjust physically to the real world after going through the complications he suffered.

"He was a very strong man, ALL man before this took place.  He now has turned into an old weak man that has very little life"

* I am very sorry to hear that your husband never appears to have recovered from his initial liver damage.

"His new liver is stage 3 fibrosis.  As far as I know, his ammonia levels are not elevated.  I did have them checked in December.  There was a small 1.3 cm carcinoma on his original liver, but as far as we know, he does not have cancer anywhere now.  I suppose that could be a possibility . . ."

* I guess you are very aware that your husband's donor liver is now being damaged very quickly by an aggressive form of hepatitis C? This is usually in good part do to high dosages of anti-rejection meds that he has taken to keep his body from rejecting his donor liver. That is why they are trying to treat is hep C. Unfortunately he will need another transplant in the near future if he can't clear the hep C. This is a terrible position to be in.

* Ammonia levels are a complication of End-Stage Liver Disease (decompensated cirrhosis) only. Not Stage 3. So that is not affecting him.
* Liver cancer does not appear until stage 4, cirrhosis not at stage 3 and has no symptoms until it is in its final stage. So again it has nothing to do with your husband's condition.

We must keep in mind that although we always want to have a transplant patient return to their old healthy selves post transplant the main purpose of transplant is to allow the patient to gain extra time that they wouldn’t have if they didn’t have a transplant.

In summary, your husband had serious complications before and after transplant that is why he never recovered from transplant. I am very sorry to hear that you are both burdened by this. My heart goes out to you both. The only way to understand what is happening with your husband now and to understand what happened before, during and after transplant. You must talk to his surgeon or hepatologist who managed his care during the transplant. They know the answers. It is just that the both of you don't. Formulate questions and make sure they communicate to you so you can understand it in terms that make sense to you. Don't be intimidated. It is their job to communicate his condition to your husband and yourself. Of course you have to ask first to get answers. This is the most important thing you can do! To understand where you are now and what you both are facing in the future. It sounds like you need concrete answers as you as speculating without the basic facts.

Advanced liver disease and transplantation are very complex issues. Not something anyone but a hepatologist at a transplant center could truly understand in all its complexities. What I know is basic on my own health status having hep C, End-Stage Liver Disease and liver cancer and all I know about transplants from my many friends who have had liver transplants.

So make an appointment with your husband's hepatologist at the transplant center and ask all the questions that are on my mind. I think you both will feel better knowing your husband's current health status and be better able to make the best choices for the both of you in the future.
NOTE: Some people do not want to really know what is happening as they would rather not know and just let the docs do their thing. Nothing has it's downsides too. When the issue is advanced liver disease and transplant it is never a bed of roses as I am sure you are aware. But I just want to warn you, you must be prepared to here bad news. Well as much as any one can be prepared for things we wish were not true. So please be sure that you do want to know. This is based on my own experience. For example the relationship between myself and my hepatologist is one of complete honesty no matter have harsh the reality. When she told be that I had to wait and get MELD exception points for my liver cancer or I would be dead within 2 years at most it was a horrible moment for me. Of course I lost it and starting crying in her office but she comforted me saying she would do everything in her power to keep me alive another year so I can get a transplant. I am sure you both have experienced your own  the roller coaster of emotions as things tend to flip between hope and despair so many times.

My best goes out to the both of you.
Try to stay positive and strong when you can. Take it one day at a time.

Hector
26 Responses
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1691407 tn?1332712547
Thanks a bunch!!!  We are keeping him hydrated.  Today he started using heavy cream in his morning coffee.  As his treatment will start on Friday, I wanted to start the fats slowly.  His body is not used to lots of fats, just like everyone I am sure.  We all try to limit fat in our diet, not add it in.  So I was thinking if we started one meal a day a little more "fatty" maybe it would help ease into this new diet better.  I suppose it couldn't hurt.  lol

Have a great day!!!!
Helpful - 0
163305 tn?1333668571
Good luck in going forward. I hope it all works well.
One obvious bit of advice, when he begins tx, be sure he drinks lots and lots of water. This is important for everyone but with kidney issues, this is even more important.
Wishing you both the best.
Helpful - 0
1691407 tn?1332712547
Gary's endo doc has him taking Lantus 35 units in the am and again in the pm.  Then we check sugars before meals and two hours after, so 6 checks a day, plus one before bed.  Lots of finger pricks!  He is also taking 9 units of novalog pre meal.  No more novalog mix 70/30.  His blood sugars are averaging for the last 7 days at 208, which is so much more stable.  It looks like his triple tx is going to start on the 15th!  Our appointment is at 1 pm.  Here we go! . . .  Saw his PCP on Monday and he wants Gary to have an ultrasound of his kidneys, some of his labs he feels look bad, so that is coming up too.  Not sure if that will cause another postpone on the triple tx or not.  I hope not!!  His PCP was worried about some of the kidney labs, but I have copies of them all, and honestly, the creatinine, albumin and one other I can't remember the name of the test, those results have not really changed for quite a long time . . . so I am thinking his PCP is just being over cautious . . . which is fine, but I do hope this does not cause another reschedule.    We just have to wait while the docs talk to each other.  Last time his treatment appointment day came along, we got a call 4 hours before the appointment to tell us that they were postponing due to his high glucose levels . . . so we actually will not know for sure until the 15th.  another  
Helpful - 0
568322 tn?1370165440
" He uses Novalog 70/30 mix twice a day, and regular Novalog short acting as needed."  
----

That means that his diabetes is not under good control.  Using insulin "as needed" means that you're dosing the insulin based on his blood sugar results and by the time the results are high, the damage already occurred.    

Diabetes and insulin resistance/hyperinsulinemia  can increase the damage progression.  That's something you can work on.  It may also help  him clear if he goes on triple therapy.  

Co
Helpful - 0
1024307 tn?1291998486
OK. Found it. Thank you. Interesting. It looks like boceprevir maybe a better choice than telaprevir.
Helpful - 0
1024307 tn?1291998486
Firefox won't let me open it.:(
Helpful - 0
Avatar universal
From: Clinical Care Options

Boceprevir or Telaprevir in Combination With PegIFN/RBV Improved On-Treatment Virologic Response Rates in Patients With Severe Genotype 1 Hepatitis C Recurrence Following Liver Transplantation vs Historical Treatment With PegIFN/RBV

Posting Date: April 24, 2012

Calcineurin inhibitor dose reductions required for management of drug–drug interactions

    Boceprevir group
        Cyclosporine dose reduced 1.3-fold
        Tacrolimus dose reduced 5.0-fold
    Telaprevir group
        Cyclosporine dose reduced 4-fold
        Tacrolimus dose reduced 35-fold

See:  http://tinyurl.com/c49g346  
You must register to view but it's free and easy and worth the time.
Helpful - 0
1024307 tn?1291998486
Hello Allison. How are you? How's Garry? Keep thinking about you two. Best wishes-April.
Helpful - 0
1024307 tn?1291998486
Allison to be worried is very normal. You are stepping into unpaved road. But if you trust your doctor, if his answers to your questions are satisfying , if he's hopeful for Garry than I would concentrate on being with your husband and giving him love and support. I'm sure you are doing it already. You seem like a wonderful partner. He is lucky to have you.:) Allison, let doctors worry about the drug interactions. If this becomes an issue I'm sure they will quickly adjust the dosages. I wish you both all the best. You're doing everything you can. Love-April.
Helpful - 0
163305 tn?1333668571
I'm sure this is all  very difficult.
You want to help your husband regain his health asap.

The real problem is this triple therapy treatment is quite new, only approved for the general public about a year ago.
There is even less data to go on for post-transplant patients.

It sounds like you've looked into this quite thoroughly.
Please keep us posted about his condition and how he does.

Wishing you both the very best.
OH
Helpful - 0
1691407 tn?1332712547
We have discussed this and the other patient they are treating has stayed on tac, but they just decreased the dose.  Apparently it is working well.  I am very concerned about it though.  When we were at the Mayo Clinic in Scottsdale, our visit with them covered their idea of choice treatment.  They had discussed a completely different choice.  They were going to use cyclosporin in place of tac and they were suggesting treatment with boceprevir.  I have done a lot of reading and we talked to our hepatologist back in Vermont that did one of the trials with incivik and he agrees with the choice for Gary to stay on tac and use incivik.  The whole thing is nerve racking . . . as Gary is quite ill . . .
Helpful - 0
163305 tn?1333668571
  I had a transplant and though I didn't do the triple treatment ( being geno 2)
I know of  other people who are geno 1, post transplant who are either doing the triple tx or preparing to do so.

Their doctors have had them switch to cyclosporin from prograf ( tacro) prior to beginning treatment.
One is at UCSF the same facility where Hector is treated.

This may be very important. I would strongly advise your husband not to begin before talking this over with his hepatologist.
He may have to delay treatment until his other meds can be correctly dealt with .

Wishing you the best of luck,
OH
Helpful - 0
1691407 tn?1332712547
Gary is taking tacrolimus, so I was told on Friday, that once he starts his treatment, that will most likely have to be decreased.  I was worried that we don't have this new dose already on hand, as we use prograf and it is a capsule.  He takes 1mg capsule twice a day.  There are so many things that I micromanage, and I am worried that if I don't keep track of everything, the doctors may screw up.  Gary also uses Ambien and trazadone, and I read both of these are on the caution list if you are taking Incivek.  He also takes citalopram and Remeron (Mirtazapine) for depression.  These are some meds that also make me nervous.  He also uses a lidoderm patch for joint pain and I read somewhere that lidoderm could be a problem.  I registered him with the nurse support team at Incivek, and they have answered lots of questions for us.  They also will follow up with us weekly or as often as we would like.  I found out about this support on the Incivek web site.  

Lots of unknowns and lots of worries . . . I try not to share those with Gary, he has enough to deal with . . .
Helpful - 0
1024307 tn?1291998486
I'm sorry this isn't going easy for you.
But you have to make sure that everything is more less under control before starting this therapy. Is Gary on ciclosporin or tacrolimus?
Helpful - 0
1691407 tn?1332712547
This is not through a clinical trial.  The clinical trials for post transplant hep c 1b triple therapy treatment are just starting through out the nation.  We did not want to take a chance of getting placebo.  The dbl therapy does not knock his vl down much at all, in fact it just stays the same around 2.5 mil.  Since we stopped all treatment (peg/ribo) in December, his sx have gotten much better. cbc labs are much higher, but his vl has risen to 28 mil.  So we feel he needs to have the triple therapy with the real drugs.

We just got a call from the doc's and they are worried about his diabetes.  Two weeks ago, his sugar levels were hi, 600+, so we have changed his insulin doses and now for the past week his average has been about 250.  So the doc's are deciding if that is good enough to start.  They may want to wait another week and see how his numbers are.  Gary is upset about that, but I know that we need to have him in the best medical condition possible before we start so the success of the treatment is higher. . .  Psychologically, we both we prepared for today, and the thought of putting it off for any length of time is unsettling...  
Helpful - 0
1024307 tn?1291998486
Hello Allison. Would this be through clinical trial?
I wish you the strength. Please keep us informed.
Helpful - 0
1691407 tn?1332712547
Well, we found a doctor at the University of Arizona Medical Center in Tucson that was willing to try triple tx with Inc for Gary.  It took all of 5 weeks to get the drugs prescribed and prior auth approved through Medicare.  We received the medications for treatment yesterday . . . a very expensive package!  But we got it!  So at a milestone . . . Gary has been feeling stronger, even though his platelets are still low 80, all other counts have gained to either normal low or normal.  So I guess he is about as healthy as he can be for the beginning of this tx.  He has prepped his skin with lots of lotion over the past week and he continues to drink lots of water.  We registered with the support nurse program through Incivek and with the medicine package we also got some starter kit stuff.  I think we are ready to begin.  The 20g of fat diet we are working on and I am thinking that if I try to keep his diet high in fiber, maybe the diarrhea and irritated hinny may not be so bad . . . but I am going to have on had the supplies that may help.  I noticed the medication Zofran for nausea.  At our appointment on Friday, I plan to ask about that.  

Are there any other items besides baby wipes with Aloe, that anyone suggests we ask for a prescription of or pick up ahead of time?

We have also found a new pcp here in Tucson as our pcp back in Vermont is finding it difficult to help Gary while he is here.  We are also meeting with an endocrinologist in two weeks to help Gary with his diabetes. In fact, the pcp we have now here in Tucson is suggesting an insulin pump for Gary.  I don't know if we could take on something new and complicated the 2nd week into tx.  We will see....

I just wish I had a crystal ball to tell us if this the choice to dive into the triple tx is worth the risks.  Even with 135 dose of peg- and 800 mg of ribo, his blood counts were so low, he needed neopogen and procrit . . . I am worried, but I am ready.  He is ready too, and he wants to "go for it", so we are off and running . . .  

I haven't posted much lately but I do read lots of your posts.  You are all a big inspiration to many with out even realizing it!  Thanks to every one of you for sharing your stories, giving advice, support and suggestions.  It REALLY helps!!  

PEACE~HOPE~TRUST  
Allison
Helpful - 0
1691407 tn?1332712547
Thank you for your suggestion.  That is a difficult task for sure.  My husband was near death pre transplant, and we do have all that information taken care of already.  We do talk about, not every day, but we have had the conversation recently.  His decision to either try to treat triple tx or not is that he still wants to try and fight it.  Mass General has already told us they will not transplant again in Gary's current medical status.  Since he has not cleared the hep C, they believe a second transplant is going to be extremely risky, as he barely survived the first one.  If he is too ill to treat using the triple therapy, is any doctor going to tell us that?  The Mayo Clinic just said they are not willing to treat him.  No reason, in fact, a doctor didn't even tell us, she just identified herself as the messenger.

Maybe it is me and the questions I do or don't ask.  I always felt like I have been a great advocate for Gary, but right now, I am questioning myself.  I don't tend to be confrontational, but I do understand the disease quite well and sx and the treatment.  I need a coach!  lol

Take care, enjoy the day!
PEACE~HOPE~TRUST   Allison
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Avatar universal
In the meantime, since you don't know what the outcome will be, if you haven't done so already, I think it would be a good idea to take care of things like updating your wills, making sure you have durable power of attorney for him, that he has an updated health care directive, and that you've talked about things like final wishes, etc.  Please try to have that difficult conversation about end of life things such as resucitation and extraordinary measures.  I don't mean to upset you or make it sound like I think that I believe that the end is near, but I do think that these are good things for everyone to have in place, and given his current status, even more so.  I imagine that you both would want to look to his doctor(s) for guidance about whether or not to treat and whether or not to transplant again.  Perhaps he is too ill to treat using triple therapy, as I believe it can cause people with decompensated livers to experience liver failure.  I don't have any answers, but I do encourage you to have the difficult conversations.  We are here for you, if we can help.
Advocate1955
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1691407 tn?1332712547
Hi Hector, Thank you so much for your response.  It was so kind of you to give us so much personal information.  Your time and effort we very much appreciate.  Gary's MELD score hovered around 18 during the fall of 2009.  Then he stated to bleed internally and ascites got bad, fluid taken off abdomen, then the coma then his score rose to above 48 and he was getting dialysis and they found a liver, but the surgeon was not able to pass it for transplant, 2 days later another liver was available and the surgeon passed it for transplant.  He received the transplant in January 2010.  We do know he will need a new liver, but we have also been told by his transplant team in Boston, that he will not be eligable for another transplant, as he barely survived the first one and since he is not clearing hep C and it has been over a year since his first one, they do not believe it would be worth while, for lack of better words. (his surgeon did give us more detailed information)  So that is why we are scurrying to get rid of the hep c.  If he clears, then they will consider a 2nd transplant. . .  Gary's case is complicated.  We do know what the outcome could be.  But if we can find a doctor that would help him with clearing the hep c, then we believe he may have a chance.  But all in the same breathe, do we want to spend the last years of his life, searching for a cure that may never happen, or do we want to just enjoy our last years together?  It is a hard decision to make.  It feels like giving up . . . it is VERY difficult.
Helpful - 0
1691407 tn?1332712547
Hi, he has had several brain MRI's and we have been told they do not see anything abnormal.  So I do not know.  His new liver is stage 3 fibrosis.  As far as I know, his ammonia levels are not elevated.  I did have them checked in December.  There was a small 1.3 cm carcinoma on his original liver, but as far as we know, he does not have cancer anywhere now.  I suppose that could be a possibility . . . We have rested quite a bit this weekend, and we are hoping to find some positive things this week.  I have to do all the legwork, all the phone calls and appointment settings.  There are some rough days, but I somehow seem to make it. : )
Helpful - 0
Avatar universal
I don't know very much about transplants or post transplant complications, but OH and HectorSF have answered above, and they will be good resources for you.  I too am wondering what else might be going on?  Did something else happen neurologically during the surgery or in recovery after the surgery (e.g. a stroke or a hemorrhage)?  What is the state of his new liver?
Advocate1955
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1691407 tn?1332712547
Hi, thanks for your input. Our Doctor at Mass General did talk to Mayo and forwarded all Gary's records to them.  This is very strange to us too.  I also talked to Mayo at least 6 times before our appointment . . . I don't get it either.  Mass General's only choice for Gary was to continue using the dbl tx.  His Hepatologist is in his 80's in VT, a very great man and Dr., his recommendation was Dr. Hugo Vargus at the Mayo Clinic.  We went with what we were told.  

His TP center, MGH, does follow him as we do labs every month.  We lived in Vermont and the climate there was just too difficult for Gary, the weather is so cold and he was miserable all the time, so heading to a warmer climate was actually something that he was greatly looking forward to.  

I do not know what went wrong, MGH was ok with us doing this, so if they had said no, then we would not have gone . . .  

His symptoms arose from the dbl tx, although he never gained much strength.  Pre transplant, he had hepatic encephalopathy bad, being treated with Lactalose and the antibiotic Xifaxan.  20 days before his transplant, he went into a coma and was on life support.  His kidneys were failing, he was getting dialysis, and there was more, it was very traumatic.  So after his transplant, he continued on breathing tube, feeding tube, all outgoing tubes, and he did not come out of the coma for at least 20 more days, then he was in and out of consciousness for another 20 days or so.  This started Christmas day 2009.  He finally was able to leave Mass General hospital at the beginning of March, then was transferred to a Rehab facility in Boston for 3 more weeks.  We did not return to our home until the first of April.  Then home health nurses came to help us monitor him and provided PT and OT in our home for 6-8 months.  He never fully recovered from this. . .

He was a very strong man, ALL man before this took place.  He now has turned into an old weak man that has very little life . . . I am not pleased, but I do love him and want the best for him.  I am just reaching out for help at this point, as I am feeling defeated . . .

Thanks again for any input.

Peace-Hope-Trust . . .
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